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TOPIC: Newly diagnosed w/SLE+ITP

Newly diagnosed w/SLE+ITP 9 years 3 months ago #956

  • PennyLane
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Hi everyone,

So, I've been diagnosed with SLE for 1 month, and I have found so much information in reading through the threads here. I was diagnosed on my 26th birthday, and have been reading about the disease since. I've found that the more I read, the more questions I have. Some of the questions I have are appropriate for my doctors, but I'd like to share my story, and maybe get some input from all of your experience. I apologize for the lengthy story that follows, but I want to get some of these questions off my chest!

[Quick background- I live in Canada, and am in the thesis-writing stage of an MA, so I'm lucky to have a flexible schedule and quite a bit of time to hopefully get better.]

I really can't pinpoint when my more general symptoms began, but I definitely started noticing changes in my energy level and mood last winter. It was also this time last year that my hands started showing more severe Raynaud's-like symptoms when I got cold. I've also been losing more hair since last spring, and this summer I was getting Raynaud's hands even in the frozen aisles at the Supermarket. I seemed to get tired really easily, after doing something as simple as the dishes, and I didn't feel excited to do much, but tried to push myself anyway, going to the gym up to five times a week, and then feeling useless for the rest of the day.
In September my gym membership expired, and I didn't renew: we were looking seriously at several properties, and knew we were getting a dog, so I wanted to wait and see what my routine and location would be. We then visited my home for Thanksgiving (Oct. in Canada). Our trip was great, but exhausting! When we were there I noticed my left great toe was sore, but I attributed it to too much hiking and dancing at a friend's wedding.
Arrived back home, and moved into the house. My toe pain came back, and was accompanied with pretty major swelling. I saw the campus doctor, and she sent me for blood work and x-rays, suspecting rheumatoid arthritis. The blood work only showed slightly positive ANA levels, which the doctor said could be the result of any little infection of some inflammation. She wanted to get me in to see a rheumatologist, but there's a severe shortage, and up to a 2 year waiting list in my province. My tests were monthly, and by December, the toe pain was gone, and was replaced with some swollen digits, sore wrists, ankles, and painful arches in my feet. Every morning was a struggle to get out of bed, and I had to go down stairs sideways, barely able to turn doorknobs most mornings. The campus doctor sent the rheumatology requisition form, telling me to expect at least a 6 month wait, and I started Arthrotec, which didn't really improve the joint pain. I was so depressed at the thought of further deteriorating while waiting for my appointment.
I went for my monthly blood test Friday Jan 7, and the results came back that my platelets were 59. So I got a call the next Monday asking me to get tested again the next day; on Tuesday, I had my blood drawn, came home, and got a call that the platelets had dropped to 8, and it was then that I noticed little red hemorrhage points on my hands and wrists. I had to get to the ER to see a hematologist waiting for me, and was told to pack for a few days (this is the day before my birthday!).
Over the next 24 hours I saw several hematology and rheumatology residents who all had different opinions, but finally the rheumatologist came to see me, and she and the hematologist confirmed I have lupus (SLE). It was also discovered through xrays that my hands are showing signs of osteopenia, or bone thinning. Very thankfully, I have never (yet) shown any lupus skin manifestations, which may be due to the very little sun we see here. I stayed in the hospital for a week, as I developed a terrible stomach flu after being there for a few days.
The criteria I fulfill are: ITP, inflammatory migratory arthritis, positive ANA, anti-double stranded anti-DNA, anti-smooth muscle antibody, and the Raynaud's.
I was started on a mg/kg dose of Prednisone (about 70mg), and have tapered 10mgs/week recently, as my platelets have risen. I'm now down to 40 mgs. I have an eye appointment in 2 weeks, and then I'll begin Plaquinil. I've been doing yoga once/week in a class for folks with limited mobility, and writing down everything I eat. I avoid refined products, including all white sugars and flours, red meat, alfalfa, and am eating between 1500-2000mg sodium/day. The only pain and stiffness I ever have now is in the arches of my feet, my right hand digits, and my left pinkie knuckle. This pain is for the most part much less great than before Prednasone. I'm a little bit more emotional, sometimes euphoric for silly reasons, but I haven't been raging or sleepless (aside from a few nights). I have seen my Rheumy once, and will again in April. I see my Hematologist weekly, and my platelets are now 159.

SO FINALLY, after that lengthy history, here are some questions I hope you can shed light on!

-Is an ANA of 1:2650 only slightly positive?
-My bloodwork shows 'positive titre = 1:2560 speckled pattern, positive titre= 1:2560 nuclear dot pattern.' In material I've read, it doesn't seem like nuclear dot is common in SLE?
-What does the anti-smooth muscle antibody do?
-I don't have the most recent anti-dsDNA blood work, but back in Nov. it was 4.9, and it looks like the normal parameters are 0-4.2. Is 4.9 fairly low, are they usually higher?
-When my platelets dropped, the blood smear showed that ovalocytes were prominent. Does anyone else have this?


-And last question, how does ITP complicate lupus?? My hematologist is very nice, and answers all of the questions that she can, but she has said we just have to wait and see. I know that she can't predict the future, but have many of you had successful platelet remissions without being on drugs?


Again, I apologize for such a long story and for all of my questions, but I can't wait to hear your feedback!

Thanks so much, and best wishes to you all.

-Penny

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Re: Newly diagnosed w/SLE+ITP 9 years 3 months ago #965

  • Sandi
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Hi Penny. I'm very glad you found us - we need you as much as you need us (we are a small group down here). I'll try to answer your questions.

Is an ANA of 1:2650 only slightly positive? If your number is correct (although I suspect it is 2560), that is a very high ANA titre. ANA's go like this: 1:20 and 1:40 are negative. 1:80 is borderline positive, then the numbers double and go on up. Mine has never been above 1:320 that I am aware of. ANA titres can change...go higher and lower, so it's not time to panic about the high titre. It may not always be that high, especially once you are on treatments.

-My bloodwork shows 'positive titre = 1:2560 speckled pattern, positive titre= 1:2560 nuclear dot pattern.' In material I've read, it doesn't seem like nuclear dot is common in SLE? I don't know about the nuclear dot, but speckeled is common in SLE. Sometimes autoimmune disorders overlap, so you might see a different pattern mixed in there.

-What does the anti-smooth muscle antibody do? To be honest, I don't know a lot about that antibody and a search didn't help much. I only found information regarding autoimmune hepatitis and Anti-smooth muscle antibody, but not much in relation to Lupus.

-I don't have the most recent anti-dsDNA blood work, but back in Nov. it was 4.9, and it looks like the normal parameters are 0-4.2. Is 4.9 fairly low, are they usually higher? On my reference range, anything under 11 is negative. Mine has been in the 40's. Your lab must use a different reference range than mine.

-When my platelets dropped, the blood smear showed that ovalocytes were prominent. Does anyone else have this? No, I haven't seen that.


-And last question, how does ITP complicate lupus?? My hematologist is very nice, and answers all of the questions that she can, but she has said we just have to wait and see. I know that she can't predict the future, but have many of you had successful platelet remissions without being on drugs? I don't think ITP complicates Lupus....it's another Lupus symptom/complication to deal with. The treatments for both can be the same, such as steroids, Rituxan, CellCept, Imuran, etc. I was diagnosed with ITP in 1998 and had years of steroids on and off. In 2003 and 2004, I had Rituxan which basically caused an ITP remission, but it also triggered Lupus for me (unusual reaction). Since the Lupus diagnosis 6 years ago, my ITP has been in remission.

You sure got hit with a lot at once. Mine was a much slower progression. It can be very life altering. I hope I helped!

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Re:Newly diagnosed w/SLE+ITP 9 years 2 months ago #2400

  • PennyLane
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Hi Sandi,

Thanks so much for your input. Sorry I have not responded sooner, but we've been living in our place out on the coast without internet.

I'd like to hear about experiences with Rituximab and lupus.

My prednisone dose is now only 17.5mg/day (from 70mg), tapering 2.5 every few days. About 3 weeks ago, I began 800mg/day of plaquinil. The arthritis in my hands and feet is much better now, on most days. However, since I've gone below 30mg/day of prednisone, my platelets have been dropping. Three weeks ago they were at 198 (from 8, 3 months ago), last week they fell to 158, and as of yesterday, they're 117. My doctors prepared me for this, but I guess it's just been the waiting game.

My hemotologist wants to proceed with Rituximab when they fall below 50. I'm not supposed to see my rheumatologist for another 3 weeks, so I suspect they'll hit 50 before that. Should I let my rheumy know about the Rituximab??

I'm a little bit nervous after reading about the 'brain-eating disease' (PML) that may be prompted/activated by Rituximab. Has anyone here with lupus had this treatment? What is it like? Did it work, and for how long?

Thanks so much for any input. I'm pretty isolated here!

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Re:Newly diagnosed w/SLE+ITP 9 years 2 months ago #2401

  • eklein
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Hi Penny,
I have SLE and ITP too. I am headed out of town and don't have time to write up the whole history, but briefly, the ITP started in 2005. It has been the only serious consequence I've had of lupus, everything else has just been annoyance that comes and goes like skin lesions, hair loss, brief fevers, itchy rashes. I had Rituxan in 2007 and got 9 months remission. I had Rituxan again in 2008 and currently have had 2 years of remission.

PML is possible but extremely rare.

This is just my speculation, but I think Rituxan is better suited to lupus induced ITP than the other types of treatments like nPlate. When I come out of this remission I will be trying imuran since I had a serious allergic reaction to my very last rituxan infusion.
Good luck, Erica
And she was!
Diagnosed May 2005, lowest count 8K.
4/22/08: 43K (2nd Rituxan)
10/01/09: 246K, 1/8/10: 111K, 5/21/10: 233K
Latest count: 7/27/2015: 194K
The following user(s) said Thank You: Frank

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Re:Newly diagnosed w/SLE+ITP 9 years 2 months ago #2403

  • PennyLane
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Thanks so much, Erica. I feel a lot more hopeful after hearing of your 2 year remission! I was under the impression that remission could only last up to one year, so this is good news.

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Re:Newly diagnosed w/SLE+ITP 9 years 2 months ago #2419

  • Sandi
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I also had Rituxan for ITP, but I had it before I was diagnsosed with Lupus. The first time I had a year of remission, the second time I've had over five years of remission. The treatment itself is pretty easy, I slept through it.

Usually, counts over 30 are considered safe, so don't worry too much if they drop as long as they are over that.

Yes, you should let your rheumatologist know about Rituxan. The hemo's office should do that, but if they don't, you can. Good luck!

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Re:Newly diagnosed w/SLE+ITP 9 years 2 months ago #2607

  • PennyLane
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Sandi- A five year remission would be amazing! You must be so thrilled with the treatment.


I had my blood done yesterday (Tues), and my count is down to 89 from 117 on Thursday. At least my count is falling predictably! At this rate I'll be at a count of 40-50 and ready for the Rituximab early next week. I feel much better about it after reading all of this board's experiences.

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Re:Newly diagnosed w/SLE+ITP 9 years 2 months ago #2636

  • Sandi
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Good luck. I hope it helps!

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Re:Newly diagnosed w/SLE+ITP 9 years 2 months ago #2649

  • Kim
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  • Diagnosed with ITP in 1983, lupus in 1990, APS in 2001, vasculitis in 2006. Current platelet count 148. In 2007 I had a stem cell transplant for autoimmune disease and currently ITP and APS remission, with a reduction in lupus activity.
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Hi Penny,
I also have lupus/ITP - I think your lab values are probably different then ours. Your ANA does seem high, but the other numbers don't seem to match what I would expect, so it could be the ANA is also a different range.

I've had high ANA's with my lupus - as high as 2560 range. SM antibodies are only seen in lupus patients, but they have yet to really identify what it means and how it effects a lupus patient. I've always had elevated SM, even when ANA is negative. I also have RNP antibodies, which always remain elevated and these are seen in other autoimmune disease, such as scleraderma, but never showed signs of that, but I do have lupus anticoagulant, which causes clotting. I've had very high DsDNA and SsDNA, with initial diagnoses of SLE and also started on 800mg of plaquenil. Within a few months the DsDNA antibodies were negative, but the SsDNA did not go negative for years, but did drop dramatically. My ANA came down, but I never dropped below 1280, unless I was on high dose steroids. With all the lupus treatments and managed lupus tests, my platelets never responded. I was initially diagnosed with ITP and about 6 years later started to have lupus like symptoms, mostly fatigue and some migrating joint pain, but no swelling. It was another 2 years before SLE diagnosis, despite the low platelet counts.

I did not respond well to rituxan, but it did provide me with more stable platelet counts, without the need for high dose steroids, although it only lasted about 8 months for me. I repeated rituxan treatment 4 times, before finally giving up on it after a reaction. I don't feel that it helped my lupus symptoms at all, nor did it help my lupus anticoagulant. I had a very complicated case, considering the combination of ITP and lupus anticoagulant -- I was bleeding due to low platelet counts and also clotting, so I required anticoagulation. I could not maintain counts above 20-30k without immune suppressant drugs (cellcept 3000mg) and prednisone at 15-30mg. As I dropped my prednisone dose, my counts dropped, once they dropped below 20k, I would bleed, because I was on anticoagulation, but without anticoagulation, I'd clot, regardless of platelet count. Once clotting at 14k platelets. Eventually I had an experimental stem cell transplant for autoimmune disease and have been n ITP and lupus anticoagulant remission, with a negative ANA, although that SM and RNP continue to be positive, so I still have lupus activity, although minimal and I consider myself in remission from ITP and lupus anticoagulant, I'm not convinced I'm in lupus remission, because I still have symptoms of joint pain and fatigue.

Rituxan works for many ITP patients and lupus patients, so it's worth a try. Good luck with the treatment, I hope it works well for you. Keep us posted.

Kim

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Re:Newly diagnosed w/SLE+ITP 9 years 2 months ago #2651

  • Kim
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Oh, I forgot. I do have some skin symptoms with my lupus. Currently chronic hives, itching and rash, which is managed reasonably well with antihistamines. I was told I have antibodies to mast cells, which result in degranulation of mast cells and release of histamine. Prior to my transplant I had sun sensitivity, but so far I don't notice sun causing me problems, although I avoid the sun - so I'm not 100% sure and not going to take a risk making my lupus worse. I used to have a problem with just going out in the sun for 15 minutes and I'd feel sick, develop a rash and sometimes it would last for days, so I equate that with sun causing a lupus flare.

I also have raynauds, which is not uncommon for lupus, but is also common in APS (antiphospholipid antibody syndrome) and lupus anticoagulant, which is seen in ITP patients. If you also have a purple lacy skin discoloration on your arms or legs, you may want to double check with your doctor to see if they have tested you for APS or Lupus anticoagulation. Both of these are clotting disorders seen in lupus and ITP, although they can also be seen as primary autoimmune disease.

ovalocytes are seen in iron deficiency anemia and I wonder if your ITP might have caused some bleeding in GI, which you might not notice. I had chronic GI bleeds, which contributed to anemia and iron deficiency and I required iron infusions to maintain my iron stores. You can be iron deficient, but not necessarily anemic and if the ovalocytes were not too many, it could be you were on an upswing and not not necessarily iron low, but your body was still adjusting. Generally your doctor will look for a patter and not take one smear as a symptom of a problem. If it corrected itself and did not get worse, I'd probably not worry about it.

Good luck.

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Re:Newly diagnosed w/SLE+ITP 9 years 2 months ago #2653

  • Kim
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Another thing I forgot to mention - I think ovalocytes can also be seen in B12 deficiency. Check you B12, because that can also cause symptoms of fatigue.

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Re:Newly diagnosed w/SLE+ITP 9 years 2 months ago #2930

  • PennyLane
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Kim- thanks so much for your info!!

I spoke with my hematologist, and the ANA values are correct, but she wasn't able to tell me about the anti-ds DNA except that it was positive. She said to discuss it with my rheumy. The anti-smooth muscle antibody info is great to know! Again, my hematologist asked me to ask my rheumy about that. While I have Raynaud's, I think I tested negative for the anticoagulation.

I'm so sorry that your disease has been such a vicious cycle, but very happy to hear that the stem cell transplant has helped! Are you able to take Plaquinil or anything else for the joint pain and inflammation?


My count is now 32, and I begin IVIG tomorrow morning. Then I'll start the Rituximab in one week's time. Finger's crossed!

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Re:Newly diagnosed w/SLE+ITP 9 years 2 months ago #3209

  • PennyLane
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So my platelet count was falling fast, and in a fairly predictable way- then I hit 40K, and I was falling, but slowly. Yesterday I hit 25K, and they finally decided to treat with IVIg.

It was very quick, maybe 3.5-4 hours. I felt fine throughout the whole day. This morning I've awoken with nausea that comes and goes. I'm not sure if this is common, but I feel fine otherwise.

I'll get my count again tomorrow, and will have my first Rituxan next Tuesday. My parents are going to fly over to be with me, for the first time since my diagnosis in late January. I'm so excited to have them here!

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Re:Newly diagnosed w/SLE+ITP 9 years 2 months ago #3242

  • rhonda
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Enjoy your visit with your parents Penny. Okay I am not only ignorant I am really dense too! I was taking a multi vitamin until the doctors put me on coumadin. Maybe the B12 is why the fatigue is so bad since I have been out of the hospital. Time to get them back into my system. Sooner or later something will sink in… The doctors will need to adjust my coumadin if that becomes an issue. I really do need vitamins.

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Re:Newly diagnosed w/SLE+ITP 9 years 1 month ago #3964

  • PennyLane
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Well, 2 days after IvIg my platelets were at a count of 77, yipee! Sadly, my parents couldn't come to be here for my first Rituximab injection- my dad went in for a stress and dye test on his heart the day before they were scheduled to come over. He had both main arteries almost 100% blocked, and several other small blockages. An emergency triple bypass was performed, and he's doing very well! It's been so shocking, because he's only 51, and runs an hour almost daily. He's never, ever smoked, or consumed alcohol regularly or excessively, and he eats so well! He's thought he's been having indigestion the past year, but I guess there was major trouble brewing. His dad died at 52 of a massive heart attack.

SO! Now I'm concerned about my likelihood of developing cardiovascular disease, since my dad seemed to do everything he could, and still got dealt bad cards! Since I'm only 26, my doctors don't seem concerned about the state of my heart. Sometimes my chest feels heavy, or I'll get a sharp pain in my chest. What kinds of cardio tests have you all gone through??

My two Rituximab shots have gone very well. The pre-treatment with Benadryl knocks me out for about 2 hours. When I woke up after my first 2 hours of the first shot, my throat was very sore, but it subsided The second shot gave me no problems :)

My platelets jumped from 25 to 77 two weeks ago, and remain there.


Lastly, and alarmingly:

I went to see my rheumatologist yesterday, for the second time. She prescribed me Plaquenil last visit, which I started March 8. The dosage seemed high to the pharmacist at the time, so he checked with her office. I received the prescription. After reading online, it seemed the prescribed 800 mgs/day was A LOT! So I called after taking that amount for a month, and asked if it was too much to continue for the next 2.5 weeks before my appointment. Her receptionist called back and said to continue the amount.

SO, I've been overdosing on Plaquenil, taking TWICE the intended amount for almost 2 months. The doctor just said "WHAT!?" and that she'd never heard of such a thing (uhh?), and she was so sorry. She showed me the post-it note between her and the receptionist, and I don't know whose fault it was. I don't care, I just want to be sure I haven't done serious damage. Who knows if the way I feel now is lupus, Rituximab, or the overdosing?!

My doctor just seemed concerned my eyes felt fine, but didn't ask me about anything else. She said the drug is cumulative, so I have LOTS in me, and to take just 200 mgs/day for the next 2 months.

Ughhhhh!!

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Re:Newly diagnosed w/SLE+ITP 9 years 1 month ago #3983

  • Sandi
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Penny:

I haven't had any cardio tests. I'm rarely ever sent for tests unless I ask. The only things my doctor is always concerned about are the twice yearly eye exams and bone density tests.

I'm glad your dad is doing well...scary!

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Re:Newly diagnosed w/SLE+ITP 9 years 1 month ago #4245

  • PennyLane
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Well, that sucked. I just went through the worst lupus flare I hope I'll ever experience, thanks to my rheumatologist dropping my Plaquenil too fast.


As I wrote earlier last week, my rheumatologist had me taking 800mgs/day of Plaquenil, when I was supposed to be taking 400mgs. It was a miscommunication between her and the pharmacist, which we discovered during my meeting with her last Thursday. She told me to just take 200mgs/day from then on, so I dropped the dose by 1/4 starting that day.

Friday night I woke up getting sick, and feeling pretty achy. All day Saturday, I was still pretty achy, but thought I could be feeling better. I woke up Saturday night, vomiting, and I was almost paralyzed- my boyfriend just barely got me into the car. By the time we got to the hospital, I couldn't even raise my head or move my arms or legs! Every fiber of every muscle seemed to be on fire. I woke up and couldn't even press the button for the nurse- so scary!! I had rashes for the first time, on my hands, knees and feet. I couldn't do ANYTHING for myself for almost 50 hours, when I finally got 60mgs of prednisone.

By Monday night I was moving again. I had to be wheeled down for my 3rd Rituximab infusion on Tuesday, because I still couldn't use my legs much.

So now I'm on 40mgs of prednisone, 30 next week, and so on. I had already been tapered down to 10mgs for 3 weeks before this happened, so I am disappointed to be going through a taper again.

My rheumatologist is on vacation this week, conveniently. Every other doctor who saw me seemed to think that dropping my dose was a big mistake, and the other rheumy who came to see me said that it was known that it could cause a lupus flare.

So now I am wondering if I should leave my doctor. I am a very easy-going and passive person, but I can't believe the mistakes and oversights that have been made here, leading to my awful experience. If I can't trust her knowledge of something as common and benign as Plaquenil, how can I trust her education on more serious issues I may have to face?

I feel like I have lost faith and trust in her. Should I talk to my hematologist about transferring?

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Re:Newly diagnosed w/SLE+ITP 9 years 1 month ago #4275

  • Sandi
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Penny:

I have a different thought altogether. I had "serum sickness" from Rituxan which is much like you described. It usually occurs 2 to 4 weeks after the first infusion. It is a known side effect and seems to happen more often than doctors catch it. It is a horrible thing to go through.

I was misdiagnosed the first time I had serum sickness, so I used Rituxan again the following year. I got serum sickness again. The risk of very serious complications, such as anphylactic shock, go up with each exposure. By possibly not diagnosing it, you may be at risk with further infusions.

Honestly, I couldn't move either. I couldn't hold a cup or turn over in bed. My husband fell asleep on the couch that night, and I couldn't even yell for him from the next room. I just laid there until he woke up. Every joint felt swollen, I had hives, diarrhea, the worst headache ever, etc. The symptoms vary with each person or exposure. It started the same way yours did - feeling unwell the day before and waking up in the middle of the night so sick I couldn't move.

Research it. All of the timing seems just right.

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Re:Newly diagnosed w/SLE+ITP 9 years 1 month ago #4279

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Oh my goodness- that sounds EXACTLY like my experience. I felt trapped in my body.

I'll discuss it with my hematologist on Tuesday, before my last Rituximab infusion. She was also on vacation during this episode.

Did you experience any reactions during your infusions? I also had IvIg the week before my first Ritux., so could it be serum sickness from that too?? How was yours diagnosed as serum sickness?

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Re:Newly diagnosed w/SLE+ITP 9 years 1 month ago #4281

  • Sandi
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Re:Newly diagnosed w/SLE+ITP 9 years 1 month ago #4282

  • Sandi
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No, I didn't have any reactions during the infusion. I doubt IVIG could cause that....I haven't heard any one ever talk about serum sickness/IVIG, but there are plenty of people with serum sickness/Rituxan.

I'm telling you, doctors miss it and dismiss it. They tend to not believe it if they haven't seen it before. I went to the ER the first time and saw the ER doctor who said it was a virus. I kept telling him that I'd been having Rituxan treatments and maybe it's related. If he'd bothered to look it up, he might have figured it out. I was sent home. In a few days, the symptoms got better.

The next year, I started Rituxan again. That time, the symptoms began within a week of the first infusion. It happens sooner after the second exposure. Again, went to the ER. That time, they called my hematologist who made the diagnosis. No more Rituxan for me. I had it much worse the second time.

They can diagnose it with a urine test - looking for protein and by symptoms. Since that time, I've had two Rheumatologists tell me that I didn't have serum sickness from Rituxan "because they've never seen that before". Okay, well if you look at the literature and side effects, it's listed. I had all of the symptoms and the timing was right. It's happened twice, after Rituxan treatments. I KNOW I had it.

Thus began my very long and on-going mistrust. I do my own research and don't always believe what I'm told. Doctors have made mistakes with me too many times. They are human. I can sure tell you the stories. You learn, girl, you learn.

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Re:Newly diagnosed w/SLE+ITP 9 years 1 month ago #4283

  • Sandi
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I posted some articles on page 2 in case you missed them.

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Re:Newly diagnosed w/SLE+ITP 9 years 1 month ago #4287

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Thanks SO much for all of the information. I'm pretty much convinced it was serum sickness now; I read the thread from the old board, and the symptoms you all described are exactly what I experienced. I had swollen hands and feet, splotchy red rashes on my feet, knees and hands, and completely paralyzing myalgias throughout my entire body. My neck and upper back were especially bad. I couldn't move my shoulders, lift my head, my hands were frozen in fists, wrists and elbows stuck at an angle. I also had a low grade fever (38-39) throughout. I found the jaw pain especially interesting, since that developed last with me, and after I had started the high dose prednisone. I couldn't do anything but blink and swallow, and I have never felt so helpless.

I also forgot to mention that I had a very sore throat during this episode, which I also experienced for about an hour during my first Rituximab shot, when the benadryl wore off.

First, I was given the equivalent of 20mgs of prednisone through IV at ~2am Sunday. That eased up my hand tension and some of the myalgias, but I was back to being paralyzed the next morning at 5am. Then I received an oral dose of prednisone 60mgs.

I wonder if the Plaquenil mistake hadn't happened at the same time, what they would have blamed it on!

After explaining this theory to my hematologist next Tuesday, will she likely want to proceed with the last infusion since the steroids seem to have either stopped or masked the effects of serum sickness?

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Re:Newly diagnosed w/SLE+ITP 9 years 1 month ago #4290

  • Sandi
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Penny:

If you wouldn't have had the Plaquenil problem, they would have told you it was a virus. Several of us have been told that.

As for having the last infusion...I've read that nothing can stop or prevent serum sickness. The only way to prevent it is to stay away from the offending drug. Current research states that the full four infusions are not necessary for ITP anyway. Four infusions are the protocol for lymphoma and it stuck for ITP. One infusion or a few lighter dose infusions usually do the trick if it's going to work. Serum sickness usually resolves in a few days, so having Prednisone may have helped, but it would have resolved on it's own. I didn't have any drugs to help the first time, and it took about four days before I could function. The second time, I was given morphine and Prednisone and it did help a LOT.

I do think that your doctor does need to take the possibility seriously after you discuss it with him/her. The fourth infusion is NOT a must in terms of whether or not you'll get a response. Many people here will tell you that. I actually got a response after one infusion the second year I had Rituxan. Then I got properly diagnosed serum sickness and we stopped the infusions.

Did you happen to have an itchy, red spot on your hand where the needle was? That would be a sure clue. I didn't the first time, but did the second time. I also had the red/purple splotches.

I read all the time that serum sickness is very rare. I think it is rare, but I also think it goes unreported way too often. I asked my hemo if he reported my reaction to the FDA, he said no. I did. It's only considered "very rare" because it's misdiagnosed and unreported.

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Re:Newly diagnosed w/SLE+ITP 9 years 1 month ago #4368

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My hand wasn't itchy at the infusion spot, but it was very red and splotchy. The rash started on my knuckles, and the ER resident was actually the first to pick up on it. Since I've never had rashes, I thought it was from being warm. IT spread quickly that night to my whole hands, knees (weird), and feet.

Prednisone 60 made it disappear within 4 hours.

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Re:Newly diagnosed w/SLE+ITP 9 years 20 minutes ago #5612

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:) Hi, my name is Diana and i have a daughter who just found out3 weeks ago that she also has sle+itp we are shocked and so confused. Mirissa is 19 and just started her life why this? anyway is there anything you could tell her i know its new to you also. anything that you think thats important.so she knows she is not alone. thank you so much

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Re:Newly diagnosed w/SLE+ITP 8 years 11 months ago #5621

  • Sandi
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Yes, ask her to join us. We would be happy to help her. Some of us have been here forever.

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Re:Newly diagnosed w/SLE+ITP 8 years 10 months ago #6944

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Sorry I haven't checked in for a while; I've been trying to forget about lupus and ITP for a bit, unsuccessfully. My plaequenil has been upped to 400mgs since July 1 (after 2 months at 200mgs, to get rid of the 800mgs I had been on mistakenly for 2 months). I've down to 10mgs of prednisone daily, and have been taking that dose for a couple months now.

After my 4th rituximab treatment, my platelets rose to 185. They've remained around that level.

I still have 7 swollen joints in my hands, ankles and feet. I saw the rheumy last week, and she said I could go up to 15mgs of prednisone, but thats it. She can't take me off right now, which is so frustrating. I can't take anything for pain, apparently, because she's afraid it will affect my platelets. Also, she and the hematologist want to start me on Cellcept. I really hate the thought of ANOTHER immunosuppresive (I've been on prednisone since January, had rituximab 4x), but she seems to think it will keep my platelets up.

I asked why, since my platelets are a great number. I guess she thinks it may help keep them there. I was really confused after the appointment. Does it help with joint swelling and pain? I seem to be reading varying opinions.

I'm sorry for the whining, I know it can be a lot worse. I just hate being tired and swollen all the time.

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Re:Newly diagnosed w/SLE+ITP 8 years 10 months ago #6947

  • Sandi
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Hey there Penny! I'm happy to see you around.

It seems that different doctors do different things. My Rheumatologist didn't have a problem prescribing NSAID's even though I have ITP. I took Naproxen right after Rituxan and have never had a problem with it. It does help with inflammation. I've been taking 1,000 mg's daily for 5 or 6 years.

I've also been on Prednisone for 5 or 6 years. I started at 5 mg's and have been on 10 for about a year. I'll be on it forever. I don't have many side effects at this low dose and have tried tapering off - can't do it.

I tried CellCept but couldn't tolerate it for some reason. I was on a low dose, but the side effects were difficult. Others have had no problem at much higher doses.

Having Lupus, you are probably going to have to try quite a few things until you find a combination that helps. I have a very long list of meds that I've tried.

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Re:Newly diagnosed w/SLE+ITP 8 years 10 months ago #6948

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Thanks for the reply, Sandi!

Isn't it funny...I used to refuse to take ANY kinds of medication, unless I was in dire need. I took ibuprofen maybe 3 times a year, and always felt uneasy about it! Now I'm going crazy, taking all of these harsh drugs and experiencing gross side-effects.

How are you doing these days? What's your current medication regimen?

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